All the passages below are
taken from Dr IraByock’sbook,
“Dying Well”,published
in 1997.

I was the first person to know that my
father was dying.

I realized it during a phone call
eighteen months before he would die. I was living in California and in the
midst of residency training required to practice rural family medicine. It
was a warm winter evening; my wife, Anita, and I had just finished dinner and
were preparing to snuggle in bed while watching Lou Grant, our favorite
television show.

"Fine, Mom, we're all fine. I'm as busy
as ever. Anita's great. We've got lemons and oranges on our trees in the middle
of winter! Hi, Dad, are you on the phone?"

It was almost eleven P.M. in New Jersey.
I could picture my mother in the tiny office of their split-level home and my
dad upstairs in the den, finally winding down from a day that probably started
at six A.M. Anita picked up the kitchen phone; the four of us were now on the
line.

"How are you, Sy?" I used my dad's first
name intentionally, to speak as adults and let him know I wanted a genuine
response. Often, while the rest of us chatted, he would get off the phone after
just a few minutes.

"Oh, we're fine, I'm fine," he said, and
then continued, "Actually, I have a question. What would make you itch?"

"I don't know, Dad. Where are you
itching?" "All over, I guess."

"More on your arms or legs or back?"

"Nope."

"Do you have hives or any kind of a
rash?"

"No rash."

"Do you feel OK otherwise? I mean, do you
have a sore throat or a fever or a cold or headache?"

"Uh-uh. I feel fine."

"How long has this been going on?" My
father was hardly a complainer. I had seen him smash his thumb while moving a
three-hundred-pound vending machine and not break into a sweat.

"Oh, four or five days, I guess."

"Are you itching a lot, Dad?"

"Yeah, a lot." Now I was getting puzzled
and a bit worried. A side-effect of medical training is that you begin to
imagine the worst when you or your family have any symptoms. I pictured the
branching diagnostic diagram for pruritus, that is, itching.

"By any chance are you turning yellow,
Dad? Are your eyes maybe a little yellow?"

"No."

"Uh, Seymour," my mother said.

I realized that she had not been
competing for phone time. "I think they may be a little yellow."

"Yeah, it's light; it's not right. How
did you know that?" Thinking back on the sound of his voice, I imagine he was
impressed at how astutely his son, the doctor, was zeroing in on the problem.

My mind was reeling. I leaned against the
dresser in our bedroom, the phone to my ear, my forehead in my hand. He was
dying.

He had told me enough for me to label his
condition: painless jaundice. Jaundice is a discoloration of the skin that
occurs when bilirubin, a breakdown product of red blood cells, is blocked from
draining into the duodenum, backs up into the bloodstream, and gradually leaches
into the skin. It makes a person yellow and itch. Not very specific, but
enough to bring a familiar list of causes to mind. At the top of the list is
cancer of the pancreas, and I was familiar with its diagnosis and typical
course. When it begins to cause symptoms, it is predictably untreatable and
uniformly fatal. Although other things can give rise to painless
jaundice--tumors of the bile duct, gallbladder, and stomach, and an enigmatic
condition known as primary biliary sclerosis--most of these are also lethal.

Occasionally, someone with painless
jaundice will simply have scarring from peptic ulcers or obstruction from a
gallstone, both of which are easily cured by surgery. It was possible, but the
odds were not good. More honestly, at the time I knew it in my gut. Dad was
dying.

My father was a remarkable, complex man,
a study in contrasts. Born in 1918, he was the son of first-generation Jewish
immigrants and grew up on the streets of Newark, New Jersey, during the twenties
and thirties. Life was hard when Seymour was a boy, and it got a lot harder
during the depression. My grandparents owned a small corner candy store that
sold newspapers, magazines, cigarettes, and cigars and had a lunch counter and
soda fountain. Mike Byock, my dad's father, also worked nights in the pressroom
of the Newark Evening News. The family struggled to scrape by, and Sy's
education took a back seat to getting the work of the store and the household
done each day.

In the 1950s, when I was growing up in
the New Jersey seashore suburbs, my father's motto was "It's nice to be nice."
He was opinionated and could be stubborn, but his humor and kindness were what
stood out. Morality and fairness were not just spouted for the sake of me and my
sister. He went out of his way to help others. He was a mensch in the truest
sense, instinctively and sincerely doing the right thing.

Our family owned a small cigarette
wholesale and vending business that Sy had built from scratch. It was a modest
operation, but it consumed endless hours of his time. As a boy I watched Dad
glide comfortably through the bars, gas stations, and racetrack stables whose
vending machines we routinely serviced. These were men's places, which could be
crude and intimidating for an adolescent boy, but in physical stature and
demeanor he was at home there. Yet he never went to bars, rarely drank, and
abruptly quit smoking after the publicity about its ill effects began to build.
Baking was his main passion and overeating his only vice.

Dad's other passion was people. Weekdays
in the summer, while we rode between stops on the vending route, in an oversized
step van with "S. Byock, Wholesale Cigarettes, Cigars and Vending Machines"
stenciled on each side, he discoursed about the various characters who peopled
his world. Tavern owners, public figures, relatives, shadowy friends from his
past, guys he knew from the war: They were all grist for the mill. Dad was an
astute observer of psychology and moral fiber; little escaped his attention, and
his crisp assessments did not permit shades of gray. He was a man of principle
who did not suffer fools kindly. Woe to him who wronged Seymour Byock or who was
proven bereft of virtue. Sy chose mostly to avoid people he didn't like or
respect, but their transgressions became teaching material for my ongoing moral
education.

It would be wrong to give the impression
that he was preoccupied with passing judgment on those around him. His
preoccupation was business: taking orders, getting paid, making sure that the
goods were delivered on time and the vending machines were functioning.
Customers and suppliers knew Sy as honest, reliable, fair, and friendly. Family
and friends who knew him well remarked on how much Sy liked people or, more
accurately, how much he enjoyed people.

He especially enjoyed children. At
various family gatherings Dad was a magnet for kids. With the infants he'd play
"So, Big!" making eye contact and crooning until they smiled. With the older
children he played games and little magic tricks, most notably "Acka Mazzacka!"

I had mixed feelings about this game, for
it required an accomplice, which was usually me, and it became a nuisance before
long. Prior to any family party Dad would grab a handful of pennies. My
instructions were to discreetly slip a penny beneath lamps, ashtrays, or candy
dishes on arrival at our relative's home. After the first few times we did
this--and there were many--I didn't have to tell him where I had stashed them.
At each family celebration, it wouldn't be long before a swarm of children
formed--from as young as three to as old as twelve--all demanding to play "Acka
Mazzacka!" Dad would show them a penny and make them blow on it or rub it. He
would then slowly intone "Aaaa, kaaa, maaa, zaaa, kaaa," palm the penny, and
point to the object beneath which it had been telekinetically projected. Squeals
of amazement and delight greeted the discovery of the transported coin, followed
inevitably by loud calls to "Do it again, Seymour. Do it again!"

My father was a handsome man in his
youth, but World War II and years of worrying about the business and how, with
only an eighth-grade education, he could support his wife and two children took
a visible toll. My earliest images are of him mostly bald with deep furrows in
his brow and a certain seriousness or reserve in his expression. Physically, Sy
was distinguished by his big nose, which was easily the size of Jimmy Durante's,
but what I remember most about his face were his eyes. The only expression he
tried to hide was worry, although over the years I began to recognize a certain
wounded darkness in his eyes. Despite the undercurrent of worry, which was
usually over money, and tides of regret over his lack of education, Sy never
lost his capacity for joy. When I was a young boy, my dad's smile was better
than a new toy; his eyes became so warm and engaging that he was irresistible.
No wonder the children loved him.

It seemed incomprehensible that all this
could be lost. Before I hung up the phone, I insisted that my father see Stuart,
his internist and a distant cousin, the next day. Two days later he had an
ultrasound examination of his liver and gallbladder and a subsequent CT scan,
which found a mass at the head of the pancreas. The next day he underwent
exploratory surgery, during which the surgeon created alternate routes for food
and digestive juices around the increasingly constricted intersection of the
duodenum, pancreas, and biliary tree and took multiple needle biopsies from the
mass.

Examination of both the immediate frozen
sections and, four days later, the permanent microscopic specimens showed only
inflammation; no cancer cells were found. Mom, Dad, and my sister, Molly, were
all delighted and very encouraged. His doctors were evasive. I was furious,
especially at Stuart. He knew exactly what was going on but was avoiding
leveling with my father. Cancer of the pancreas often incites inflammation
around itself as the blocked enzymes try to digest the glandular tissue that
produced them. It's fairly common in these situations for biopsy specimens to be
negative or inconclusive.My father deserved to know that his time was
limited; instead, Stuart dangled a vague, faint hope and deflected questions by
directing attention to postoperative issues. He said things like "You're going
to get stronger and be back to feeling yourself before long."

Stuart's love for my dad, his favorite
cousin, and my dad's trust in him, limited my ability to intervene. If I had it
to do over again, I would press hard to change doctors then and there. Looking
back, I think that Stuart should have been relieved of his responsibility for my
dad's medical care and relegated to a supporting role as a member of our
extended family. As things unfolded, the problem proved to be continuing.

After the surgery Dad indeed recovered
rapidly, and within two weeks he was back at work. When I inquired about their
plans for the future, Mom and Dad said that they were just going to wait and
see. They made no plans to sell the business or to vacation and held no real
discussions of end-of-life issues. My attempts to raise serious subjects were
unwelcome, an assault on hope. So I kept my concerns to myself, and I was alone
with the truth and my grief.

Naturally, the miles between us and my
intense work schedule contributed to my isolation. I spoke by phone with Molly,
who lived in New York City, and tried to express my concerns. She, too, needed
to believe there was a chance that Dad would get well. Most of the time I was so
busy that it was easy not to think about what was happening in New Jersey. The
phone reports were all good--no signs of problems.
Six weeks after Dad's surgery, Molly, Anita, and I surprised Mom and Dad by
meeting them as they were walking into a Broadway show. We had given them the
tickets as a Hanukkah present. During dinner after the show, their pleasure with
our visit turned into jubilation when we told them Anita was pregnant. Their
first grandchild would arrive in June.

Dad looked well--a little thinner from
the surgery, but strong. He was eating well, had no complaints of pain, and
seemed to have as much energy as ever. It was a happy time, and it seemed right
to let it be. The only gloomy remark that week came from Dad, while he and I
were driving to a bus depot to fix a jammed cigarette machine. He said, "I hope
I'm around to see that kid of yours grow up."

"I hope you are, too, Dad. I really hope
you are, too."

My father and I had become good friends.
We usually spoke intimately while doing something or going somewhere, usually in
a car, sitting shoulder to shoulder, facing ahead. This habit came from years of
working together like this, after school, on weekends, and most summers. The
transition from boy-and-his-Dad to father-son friendship had not been smooth.
During my high-school years, the Vietnam War had been fought every night on a
small screen in our kitchen and at our dinner table.

My father was a lifelong Democrat who
simply could not believe that Lyndon Johnson and Robert McNamara could be wrong.
"What about the Gulf of Tonkin?" he'd yell. I would yell back, "We need to make
peace, not war!"

As a freshman in college in 1970 with the
draft lottery number of 13, I studied Selective Service regulations, prepared my
conscientious objector claim, and memorized maps of Canada. Dad hated war and
lost no love for the military, but, as a veteran of World War II, he also hated
draft dodgers. "This will follow you forever!" he'd exclaim. "You're ruining
your life." Ultimately, it was my appearance, not my politics, that confirmed my
moral degeneration in his eyes.

When I came home for spring break that
year, my hair had passed my ears en route to my shoulders. My allowing my curls
to grow was proof to Seymour that his son had been lost to drugs and
rock-and-roll. For two years Dad and I rarely spoke and carefully avoided
confrontation. My admission to medical school eased tensions; once again, he
spoke with me rather than at me.

During vacations in medical school I
still occasionally ran the business for a week to allow my parents to get away
on vacation. I would hear from the customers how proud my dad was of me.
"Really?" I'd say. "What makes you think so?"

"Oh, yes, he talks about you all the
time!" And they would recount recent events in my life; passing some big exam or
getting engaged. At first I was amazed; Dad never told me he was proud or
seemed even to remember any of the details of my life. This was his way. Part of
it, I am now certain, was knowing that his customers would tell me.

As father and son our wounds healed, and
a new phase in our relationship began in April 1978 when I married Anita. As
long as he lived, Dad spoke of our wedding day as "one of the happiest days of
my life." His son was a doctor. He had a daughter-in-law whom he loved, and who
loved him, and the promise of grandchildren. His dream, which had been his
parents' dream and, before them, the dream of his immigrant grandparents, had
been fulfilled. These were the best of times. But to me, those times now seemed
long ago and brief.

In May, four months after his surgery,
Dad began having a deep ache in the pit of his gut that the Darvon he had been
given after surgery did not touch. A repeat CT scan showed that the
pancreatic mass was much larger and metastatic nodules of tumor were in the
liver. The diagnosis was now confirmed. While I was saddened by the test
results, I was, I admitted to myself, relieved that the secret of his illness
could now be shared. An oncologist encouraged Dad to take mild chemotherapy
once weekly and referred him for radiation therapy "to slow the growth of the
lesion." I managed a week off and flew to New Jersey.

Each morning I drove my dad to the cancer
center and back. We usually took local roads made familiar by years of vending
routes, slipping through the neighborhoods of Ocean Township, Eatontown, Little
Silver, and Red Bank to avoid traffic and break the monotony. He began talking
seriously about selling the business. During the two and a half hours or so
our daily outing consumed, he also told me what it was like to be dying, as,
years earlier, he had taught me about life and about right and wrong.

Twenty minutes into our wait at the
cancer center one morning, as Dad sat resting with his eyes closed and I flipped
through a magazine, he said, "They give you only six months to live, and
then, little by little, they take it back from you."

Another lesson came on the way home from
the cancer center when I suggested that we stop and have coffee with some
friends who owned a luncheonette on the boardwalk in Long Branch. To my
surprise, he declined.

"I don't want them to see me like this."

"Like what, Dad?"

"Well, like this. I don't look so good. I
look sick, and I think I smell bad, sick-like, too."

"Dad, are you embarrassed by being ill?"

From the passenger's seat he turned his
head to look at me. "Yeah, it's embarrassing. And it makes other people
uncomfortable."

I kept my eyes on the road, blinked back
tears, and tightened my jaw, hoping he wouldn't see. Here I was with the man
whose very being defined pride for me. Pride was being at my father's side,
pride was being seen with him in public; my personal pride arose from my
father's approval of my accomplishments. It took a moment to make sure my throat
was clear before speaking, "I don't think you should feel embarrassed about
being sick. I'm still really proud you're my Dad."

Lila was born in June 1980, and three
weeks later we flew to New Jersey. In spite of the radiation treatments and
chemotherapy, Dad's health was continuing to deteriorate. He was losing weight
and becoming weak. His strong tenor voice had become raspy and strained.
I suspected that the tumor was robbing him of energy and appetite, something all
cancers can do but for which pancreatic cancer is infamous. As we visited
and celebrated the new life among us, I noticed that Dad's appetite was not that
bad. My own evening forays to the kitchen uncovered another cause for his weight
loss.

Dad had always been heavy, and he had
been diagnosed years earlier as a borderline diabetic. He also had high
cholesterol and a strong family history of heart disease, and thus, under
doctor's orders, had long since given up eating eggs and red meat. When
radiation therapy was started to his pancreas, the source of the body's insulin,
Dad had been given special testing strips and told to check his urine for sugar.
These "dipsticks" on occasion began to show that he was "spilling sugar" in his
urine, so Mom had tightened up on his dietary habits, feeding him dietetic this
and nonfat that. Seymour Byock, for whom eating was a central joy in life,
had been sentenced to culinary confinement.

Dad and I began stopping for lunch on the
way home from the cancer center. It was our guilty secret, but he enjoyed the
hot dogs and pastries. Remarkably, his famous appetite had not yet succumbed to
the cancer. For a few days I bought real ice cream and whole milk under the
guise of wanting them for myself. While Mom understood why he should be allowed
to eat anything he wanted, my arguments never quite swayed her. Medical degree
or not, I was her son; it would require a call from the doctor for her to
change.

I hid not spoken with Stuart since the
earlier trip home, when I had spent a few unsatisfactory minutes with him and
had asked him in earnest, “Don't you think you should level with my father and
let him know that we strongly suspect he has cancer and a limited time to live?”

He had answered, with quick condescension
and a lecturing tone, "With a few years of practice, Ira, you'll understand
that a doctor must not destroy hope. I know what I'm doing." I was too stunned,
appalled, and exasperated to reply, but I immediately understood the arrogance
of a doctor's paternalism. Hope? Hope for what--to live forever?! What about
truth? What about respect for a person's right to make choices in his life? Who
elected him to make critical decisions for my father that had nothing to do with
medicine!?

Now I called Stuart at his office.

"Stuart, I came home thinking that the
twenty-five pounds Dad has lost since spring was due to tumor anorexia. It turns
out that he is literally starving to death because Mom is fixated on his
diabetic and cardiac diet. She's certain that if she allows him to spill sugar
in his urine, she will kill him. As a result, almost nothing he is eating has
any real food value.

"I have been trying to convince her to
change, but she needs to hear it from you. He should be eating any damn thing he
wants, including ice cream and eggs and steaks, as long as he's able to digest
them. If he needs insulin, and he probably will, then we'll deal with that." I
spoke slowly and deliberately, explaining the events and the plan for care as I
would to an intern under my supervision. I let hang the unspoken question: "How
could you have allowed this to happen?"

"I'll call her tonight," he replied
contritely.

Once he was fed, despite his cancer, Sy
gained weight and regained a bit of his strength and sense of humor. His voice
was less hoarse. Within a month of liberalizing his diet he did require
insulin to keep his blood glucose in the nearly normal range. This was easily
managed, with a single notable exception.

One evening in late September, now back
in California, I was on call, writing orders at a patient's bedside in the ICU
(intensive care unit), when the hospital operator paged me and told me to call
home. Anita told me that Mom and Molly had just called from New Jersey and were
very worried that Dad was acting strangely. I called them immediately. "He's
become confused within the past half-hour or so," said Molly. "We called Stuart
at home, and he said it was probably a tumor in his liver causing problems, and
he wants us to come by first thing in the morning for a blood test. Is there
anything we can do tonight?"

"Mom, is one side of him weak? Is he
shuffling one leg or not moving one of his arms?"

"No:"

"How about his face, is it symmetrical or
is one side sort of flat?"

"No, I think it's all normal."

"Is he sweating?"

"Yeah, Ira, he is."

"Put Dad on the phone, Molly."

All I could make out from Dad was
"Hello." Everything else was gibberish.

"I think he's having an insulin reaction.
I want you to get three or four teaspoons of sugar into him as soon as possible.
Right now. He can have orange juice, too. If he's not better in ten minutes,
call an ambulance. Is that clear? Got it?"

Hearing my name, my father picked up the
phone. "What the hell was that about?! That's the strangest thing that ever
happened to me."

"An insulin reaction, Dad. Your blood
sugar got too low. Remember the nurse told you about that when she was teaching
you to give yourself the shots? It's not dangerous, as long as it's treated."

The immediate crisis was over, but I was
not relieved. As I thought about what might have happened had I not been a
doctor, I shuddered. I struggled to speak calmly. "Tomorrow morning, keep the
appointment, but I want you to see Joel Shapiro." Joel Shapiro was a
gastroenterologist and one of Stuart's partners. "I really want him to be your
doctor. OK?"

"OK, Ira. Thank God you were there."

"Yes, Mom, thank God I was here."

"We love you," they said in chorus.

"I love you, too." I hung up. Now, I was
sweating. I called Anita; as I told her the story, I began to cry.

In the early winter, a year after his
surgery, Dad began again losing weight and becoming weaker. Although we put him
on supplements like Ensure and gave him vitamins and pancreatic enzymes to
swallow, no dietary trick would work this time. He had already lived months
beyond the norm for pancreatic carcinoma.
He accepted that time was limited, but he wanted to make the best use of what
remained. The business had been sold, fiscal affairs were in order, and visiting
family and friends had become the highest priority. A trip to Fresno was hastily
planned to coincide with his birthday.

Anita and I met my parents' plane late in
the evening. As we greeted each other and walked toward the baggage claim area,
I thought that Dad looked yellow. "Maybe he's just sallow," I thought to myself.
"Maybe it's just the fluorescent lights." The next morning I knew he was
jaundiced.

"Dad, you're yellow again," I said, as we
were sitting down to have coffee.

"I am? Again?" he looked bewildered.

"What did Dr. Shapiro say when you saw
him the other day?"

"He had an emergency at the hospital, so
I didn't see him. They just drew my blood at the office, and we're supposed to
call in a few days."

I was glad he had not seen the doctor,
because he would never have let Dad make the trip. Now that he was here, I could
take care of him in my medical universe. This, at least, was comforting.
As a senior resident, I was convinced that our dingy, under-funded, overcrowded
hospital gave the best medical care in the world. While other centers might have
famous names and reputations, I knew the faculty who constituted Valley Medical
Center (VMC). Together we had walked, time and again, into the chaos of blood,
agony, or despair, and together, time and again, we had brought order: cure, or
at least comfort. I would have trusted them with my life; now I trusted them
with my Dad's. Before noon Dad and I were at the VMC lab having his blood drawn
for a blood count and chemical panel. While we waited for the lab results, I
gave him a nickel tour of the hospital and ducked in to talk with one of the
faculty attending physicians who was an expert in interventional radiology. I
explained my father's case and we discussed the need for an ultrasound study to
look at his liver. The blood test results came back within an hour. His serum
bilirubin was elevated, consistent with his jaundiced appearance, and the liver
enzymes were elevated in a pattern that suggested obstruction of bile drainage
with secondary hepatic cellular inflammation. All, unfortunately, as expected.
The ultrasound examination revealed that the obstruction of bile was within the
liver and from a metastatic tumor. This news was particularly bad, because it
meant the obstruction could not be treated by placing a plastic channel, or
stent, through the obstructed bile ducts.

By four o'clock we were home, relating
the news to Mom and Anita.

"Well, what are they going to do?" The
tone of Mom's voice echoed with questions and unspoken demands: He was doing
so well, how could this have happened? He had the surgery to keep from being
obstructed. What did we do wrong? We were so careful, and we've been hurrying to
make this trip; this can't be the end. We're not ready. It's not fair! There
must be something that can be done!

I listened to what remained unsaid. My
heart ached as my mind raced to formulate an adequate response.

Anita came to my rescue. "Who have you
talked to at the hospital? Who are you going to have him see?"

"I've already spoken with Marcel
Lagrange, the radiologist, and we talked with him about our options. We think
that probably the best next step is to place a catheter into the largest
collection of bile within the liver." Under ultrasound guidance and with a local
anesthetic, a needle would be inserted below the right ribs into the liver and a
catheter threaded into the largest "lake" of bile, allowing it and its
tributaries to drain into a removable bag attached to the skin. It could all be
done as an outpatient procedure; if all went well, Dad would be home in a matter
of hours.

"Dr. Lagrange can do it tomorrow
afternoon. And tonight I plan on talking to Dr. Bellows." I looked at my
parents. "He's a really good Oncologist. I also want to talk to Dr. Catellano,
one of my teachers who is a gastroenterologist, and get both their ideas. And
before it gets too late tonight, I'll call Joel Shapiro back home, let him know
what's going on, and see what he thinks."

"Oh, OK." Mom sounded relieved; at least
there was a plan. But I noticed how tired she looked. The illness was my
father's, but the ordeal was hers as well. I thought that as emotionally hard as
the current crisis was for me, it was relatively easy for me, being inside the
medical system. I could only imagine how scary and overwhelming it must be for
them, dealing with the various problems and crises in New Jersey.

"Dad, do you understand what I’ve been
talking about? Do you have other questions about the procedure, or other things
I can answer, or that I should ask the other doctors?"

"No." It was classic Sy. He knew the
score, the problem was straightforward, and we had a game plan. It wasn't pretty
and it wasn't fun, but it had to be done.

Complaining was not Sy's style. He didn't
even complain the next day during the "percutaneous, transhepatic, biliary
pigtail catheter placement," although it ended up taking twice as long as
expected and was much harder on him than I had hoped. I knew he was in pain
because he wasn't kibitzing with the young radiology technicians who were
helping Dr. Lagrange, and there were beads of sweat on his forehead. We started
an IV, and I gave him a small amount of morphine, which helped a lot. At the end
of the procedure the bile was drained but so was Dad--utterly exhausted from the
pain and woozy and queasy from the medicine. We decided that he should be
admitted for IV fluids and observation, and I asked Gerritt Smith to be his
doctor.

I had my pick of admitting teams and I
chose Gerritt, not because of our friendship or his irreverent sense of humor,
though I considered both to be assets. Even as a resident, Gerritt was the sort
of physician who is sometimes referred to as a doctor’s doctor; confident in his
knowledge and his craft, he also had a heart and was not ashamed to show it. Dad
liked him immediately. I was present while Gerritt took a history and reiterated
the plan for Dad to hear. I used the opportunity to discuss Dad's preferences
regarding cardiopulmonary resuscitation (CPR). If a patient was in the
hospital and had a heart attack, ten people would respond with tubes and chest
compressions and electrical shocks to his chest, unless a doctor wrote a "do not
resuscitate" order. Dad and I had once before talked about these things, but
it had seemed theoretical. Even now it was just a precaution, part of complete
planning. As tired and weak as he was, Dad's response to the question of whether
he would want CPR was characteristically terse: "Shit, no. If I die, just bury
me."

In the early evening Mom, Anita, and Lila
came to the hospital to visit. Dad was already feeling better and had been able
to eat a little dinner. He was even able to muster enough strength to hold his
grandchild for a few minutes. We left at about nine P.M., anticipating that he
would be discharged in the middle of the next day.

The next morning Gerritt met me as I
walked onto the ward. His somber expression told me something was wrong.

"Ira, your father had a rough night.
About one-thirty he spiked a fever and had chills, and about fifteen minutes
later dropped his pressure. There were a few minutes when things looked real
shaky, but he pulled out of it."

"What happened? Why wasn't I called?!" I
looked at Gerritt with annoyance.

"They called me, and I came right in. We
cultured him up and I put in a central line. If he hadn't stabilized quickly, I
would have called you." As he spoke and I noticed the tiredness in his eyes, I
understood. Gerritt was Sy's doctor, and he was doing his job. Part of his
job was to allow me to be family here, son to my dad.

"Thanks, Gerritt. Thanks a lot."

As I walked into Dad's room I was struck
by how small he looked. Above him an oscilloscope traced the electrical activity
of his heart, and chrome IV poles framed the head of his bed. The IV in his left
arm was attached to a bottle of saline, and a plastic bag of antibiotic solution
was piggy-backed into the tubing at his wrist. Another IV, this one a large-bore
catheter that entered the subclavian vein just below the midportion of his right
collarbone, was attached to a three-way stopcock valve. Through it saline was
flowing at a to-keep-open rate; also attached to the stopcock was a manometer
that provided measurement of central venous pressure, a guide to his volume
status. The third channel led to a dopamine drip with its own infusion pump that
was standing by, just in case that medication was needed to raise his blood
pressure. Oxygen tubing ran from his nose. A call button was pinned to his
pillow. A urine bottle hung at his bedrail. On his bedside table was a cafeteria
tray with his untouched breakfast, a pitcher of water, and a menu of the next
day's meals.

"Hi, Dad:" I managed a simper. "How are
you doing?"

"Oh ... it was ... a lousy night." He
whispered, not from breathlessness but from sheer lack of energy. His pallid
complexion held little more color than the sheets on his bed.

My father was dying. I had become almost
accustomed to saying the phrase in conversations with close friends, but now I
knew it in a new way. Dad
was dying; actively, perhaps imminently.

As if to reassure me that he is not dead
yet, Dad opened his eyes and whispered, "You know what? That son-of-a-bitch ...
friend of yours ... Gerritt ... told me jokes ... the whole time ... he was
torturing me." He closed his eyes with a wan smile.

I leaned over and kissed his forehead. "I
love you, Dad. Get some rest, and I'll be back a little later." As I was
leaving, I reached under the sheets and tickled the sole of his foot. "And Sy,
no more shenanigans, OK?"

Mom was shaken by the news of Dad's near
demise and, at the hospital an hour later, by his appearance. But together she,
Anita, and I regrouped. The samples of blood and bile tested grew a coliform
bacteria that was sensitive to two of the antibiotics, so after forty-eight
hours without a fever he was changed to oral medications, and the next morning
we took him home.

He slept the rest of that day but, with
some coaxing, was able to sit with us during dinner. He took only sips of juice
and chicken broth and spoke very little, as if conserving his strength. Lila was
asleep in her Sears wind-up swing, rocking and clicking beside our dining room
table. After quietly looking at the baby, Anita, and me, he spoke. His voice was
strained, but his determination was clear. "I want to give you a gift. I want
you to go out and buy one of those video recorders and cameras. I want her to
know who I was."

"Oh, Dad. We'll do it if you want, but I
promise you she'll know who you are."

Anita rose and put her arms around him.
"I love you, Dad. I promise, too, our daughter will know who you are." She began
to cry as she hugged him.

"I love you, too, honey." He patted her
arm and recited one of his famous Syisms: "Don't worry, it'll all come out in
the wash." This stain, of course, would not come out; his absence would
indelibly color our lives.

Despite Anita's training as a physician's
assistant and my own expertise, caring for my father was not easy. Yet it did
seem natural. If we had had less clinical experience, I'm certain we would have
hired visiting nurses or brought in hospice.
As it happened, Esperanza, the hospice affiliated with VMC and which I had
cofounded, was still rudimentary and offered little we could not do for
ourselves.

As I look back it seems ironic, yet
fitting, that what I really needed to know about care of the dying I learned not
in medical school or my residency training but from the care my parents had
given to Leah, my maternal grandmother.
I was eight years old when Gramma Leah had her stroke. She nearly died abruptly,
but over the first few days she stabilized and slowly improved enough to be
discharged to Kessler Institute, a state-of-the-art rehabilitation hospital in
northern New Jersey. Months and months of therapy left Nano, as Molly and I
called her, able to barely communicate and to minimally assist with her own
feeding and toileting. Money and insurance coverage were gone. Nursing
home placement was advised, but it was out of the question; my parents took her
home. Nano lived with us for the next year. Mom shouldered the heaviest load,
but our entire family took part in her care. A nurse and a physical therapist
visited weekly and taught us what to do. While my Mom's care for her mother
might have been taken for granted, I was struck, even as a boy, by my father's
unabashed tenderness toward Leah.

With our love and care, Nano steadily
improved and eventually returned home with my grandfather, Harry. With help she
could manage her own household.
We made the hour's drive north every weekend to visit, take her shopping, and do
chores around the house. Twice a month for the next twenty years my Dad also
did another thing she could not do for herself. With a stainless-steel basin and
special clippers reserved for the task, a ritual developed: she soaked her feet
in soapy water, and then while he bantered, relayed gossip, and told her fibs
and bawdy stories, he cut her toenails. This ritual continued well after Dad had
himself become ill, until die died in September 1980.

Actually, Dad required little care when
he was first discharged from VMC. He rested all afternoon, garnering strength,
and on his sixty-third birthday we celebrated in the evening with a sumptuous
meal and home-baked cake. It was a happy time. Nothing was said about how
fleeting and precious it was. As I look back, these two weeks seem an almost
idyllic respite from the violence of his illness and inexorable decline. Dad
regained some of the ground he had lost. He was able to get around by himself
and do all of his self-care, with Mom and me managing his medications and
changing the adhesive ostomy bag at his right flank into which the catheter
drained. We played in the park with Lila and shopped for a video camera. Mom
indulged herself in buying little dresses and tchochkes for Lila. Dad went along
on as many of these ventures as his energy--and patience--would allow. One of us
was always with him if he chose to stay home.

Anita and I lived in an older home in the
neighborhood of the community college. Over these few weeks our one-bath,
two-bedroom, stucco Spanish-style home had gradually acquired a quasi-clinical
decor. A front room that doubled as a guest room was now the sickroom. We rented
a queen-size bed with a firm mattress and placed our dilapidated sofa bed in
storage. The urine bottle became a familiar fixture in the room, and a portable
bedside commode had been tucked behind the closet door since Sy's most recent
trip to the hospital. In the living room stood an aluminum walker that he
refused to use. In the kitchen, cans of Ensure formed a pyramid on the counter.
Jars of Metamucil and plastic bottles filled with medicines and vitamins were
neatly arranged between the toaster and the windowsill. A three-ring binder
containing the current medication log, selected medical records, and a copy of
Sy's living will stood upright alongside the cookbooks. We had cleared a
vegetable drawer in the refrigerator for other medicines, a liquid morphine
solution, and two types of suppositories--one for constipation, another for
nausea. Also in that drawer were several vials of injectable pain medicine
Gerritt had prescribed.

One morning Mom woke me at around six
o'clock; Dad had awakened in a cold sweat and was complaining of his side
hurting. Within minutes I pinpointed his liver as the source of pain,
undoubtedly due to another infection, and we immediately took him to VMC. Within
an hour he was admitted to a semiprivate room.

An announcer called the play-by-play for
a baseball game in Spanish from a television in the corner of Sy's room while I
started an IV, drew blood, and collected new samples of bile for culture. As
soon as the radiology department could take him, I sent him down for a chest
X-ray and another ultrasound test. Gerritt, the attending physicians, and I
assumed that the collections of bile within the liver had again become infected,
but we wanted to make sure he didn't have pneumonia or an abscess that needed
draining. Dr. Lagrange repositioned the biliary catheter for better drainage.
Dad tolerated all this without complaint, but it sapped his energy and washed
him out for the next few days. On the fourth day, I knew he was a little better
because his main concern was how for his new roommate, who had been admitted the
day before. Dad was worried about the late-night wailing in Spanish that he
could not help hearing. I inquired and learned that his roommate, Jorge, an
undocumented migrant worker, had been in a serious car accident and had been
told the night before that his four-year-old son had died in the crash. Though
Jorge spoke almost no English and Dad even less Spanish, by the time of his
discharge three days later, Sy and Jorge had somehow become good friends.

Early on a Saturday afternoon, two days
after he had conic home for the second time, Dad and I sat together on the
covered porch in our backyard. I had just returned from weekend rounds, and he
had just finished breakfast and come outside to sit in the shade. At first
neither of us said much, and I busied myself adjusting the video camera atop a
sturdy tripod. While Dad felt self-conscious about his appearance in public, he
seemed completely unaffected by the presence of the camera. I focused it and
pushed record, knowing we were about to have an important discussion, and
wanting to capture every fleeting minute of our time.

Mom and Dad had been scheduled to leave
two weeks earlier, but when he had gone into the hospital their return had,
naturally, been postponed. I'd begun to worry whether he would make it back to
New Jersey. We hadn't talked about it for months, but I knew the hospital in New
Jersey was where he wanted to die.

Dad sat in a padded wooden armchair I had
dragged out onto the porch for my parents' visit. Although it was already
seventy-five degrees out, he asked me to help him on with his beige cotton
jacket, and he wore his light blue summer fedora. When I watch the video now, it
is as if the mental image I carry of my father has been digitally morphed with
that of a famine victim. He is all bones, his nose more prominent than ever,
and, even seated, his once-heavyset frame seems almost lanky.

"Mom told me you ate well." For weeks the
status of his caloric intake had replaced the weather as preferred small talk.

“Yeah, it was good," he responded,
without emotion.

"Did Molly call this morning?"

“Yeah, she called, but I told her to stay
home." He looked out at the remain of last year's garden, his chin cradled in
his left hand in a pensive pose. Molly had just spent a week with them in New
Jersey, and he knew she needed to be back at work in New York City.

"What do you see happening after you get
home to Jersey?"

"Dr. Markham will find something to do
for me." He referred to his oncologist. After a long pause he added
emphatically, "I just want to get stronger so I can move myself!" Another pause.
"That's all. I want to lay out in my backyard."

He was somber. Our conversation had an
eerie, matter-of-fact tone, despite our mutual acknowledgment of the gravity of
the situation.

I pulled aimlessly at the crab grass that
had overgrown the flower beds on which I squatted.

"One problem with being at home is going
to be the stairs." The small trilevel tract home would be confining for him,
even now.

"If I am too weak, I'll go to the
hospital." He turned, meeting my gaze for the first time, and, wordlessly, with
his eyes and an upward turn of his palm, asked, What else is there to do?

"So you still see yourself eventually
going to the hospital?"

"I don't know. When I'm at home I might
just rest."

"Dad, I think one possibility, if things
get to be too much at home, might be getting the hospice team involved. They are
really set up to do this sort of thing and they could provide Mom with the
support that she'd need. Another possibility might be the hospice unit at
Riverside. It's better suited than the hospital to people who are sick but not
needing a lot of acute treatment. It's something to keep in mind."

"Yeah." He nodded slightly in reply.

We sat without speaking for a long time.
A minor commotion next door, where a garage sale was in progress, provided a
momentary distraction.

"Well, shoot, I wish things were
different, Dad."

"Me, too." He answered quickly, as if I
had spoken his thoughts. There was sorrow in his raspy voice.

"I know it's selfish, but I wish you
could stay here," I said, as I pulled weeds. He was absorbed in thought and his
expression remained unchanged. But he didn't say no. A month before he would
have rejected the idea outright. I was trying not to pressure him, but we needed
to be ready to do something. Yet on any given day I don't think any of us knew
quite what. Dad's physical condition changed almost daily; at the moment of our
conversation he was still too weak to consider traveling, yet he seemed to be
getting a bit stronger. But I knew that things could take a turn for the worse
in any hour.

Two years ago, the idea of dying at home
would have been completely foreign to Sy.
During his lifetime, medical care had advanced by leaps and bounds; antibiotics,
surgery, and cardiac care were routinely saving people who would have succumbed
to their diseases without these miracles of modern medicine. In the culture of
his time, being in the hospital provided assurance that "everything possible"
would be done for a loved one. Even before he became ill, we had had discussions
about the work I was doing with hospice and the advantages of home-centered and
family-centered care for people who were dying. When I was in New Jersey, we had
talked about it again, though still within the context of my work. He had
seemed interested, though he had mentioned that he saw advantages to being in
the hospital so that Mom would not suffer.

On Wednesday morning he complained about
his side hurting. For Sy to report pain without being asked meant it was
serious. When I examined him, the right upper portion of his abdomen around the
liver was tender. I gave him an injection of pain medication and he was able to
sleep. When he awakened from his nap, he was chilled and had a 101-degree fever.

I immediately started him on an
additional oral antibiotic, per the contingency plan that Gerritt, the other
doctors, and I had worked out. I knew it was a temporizing measure at best, and
Dad needed to know it. He was lying on his bed in the guest room, his head and
upper chest propped up on a red corduroy reading pillow. The windows were all
open; a gentle breeze made our batik curtains billow into the room. He was awake
but very weak. His skin was almost gray and his brow was beaded with sweat. I
pulled up a chair to the side of the bed and put my hand on his forearm. "We
have a couple of serious things to talk about."

He looked at me briefly and then turned
back to facing straight ahead, as if to say "OK, I'm ready." Once again, we
would conduct business shoulder to shoulder.

"Dad, the infection has obviously
returned. It's pretty clear that the antibiotics pills aren't going to cut it by
themselves. If we're going to get home, we have to move quickly. I know you hate
being in the hospital, but if we put you in for a day or two we could pump some
more heavy-duty IV antibiotics into your system and, hopefully, get things back
in control. I could then fly home with you to make sure that things go all
right. We would have to leave as soon as you were discharged, because I think
all of it will only buy a fairly small amount of time."

He continued to look ahead, knowing I had
not finished.

"You're the boss, and we'll do anything
you say. I know you've talked about wanting to get back to New Jersey and
wanting to be in the hospital when you die, but it's important for you to know
that Anita and I would like to care for you right here, in our home. We've
talked with Mom, and she is OK with staying here if you are. We are already set
up to care for you; everything we need is right here. More important, we want to
take care of you. We love you so much, it wouldn't seem right to have
strangers taking care of you when we could be doing it."

Dad slowly turned his head and looked
into my eyes. My efforts to be matter-of-fact in this exchange had collapsed,
and I was no longer bothering to blink back my tears. I tried to smile while I
held his gaze, wanting him to know how deeply I meant what I had said. I
expected him to ask questions, but he didn't. Instead, after what seemed like
minutes, he again turned to stare past the foot of the bed, laid his head back
against the pillow, closed his eyes, and nodded.

"You mean you'll stay with us here?
You'll let us care for you here until you die?" Once again, he nodded.

"Oh, Dad, thank you! Oh, Dad, I love you
so much!" I kissed his forehead. Until that moment I had not realized--had not
allowed myself to consider--how important his decision was for me. I knelt at
his bedside, gently laid my head in his lap, and openly wept, while he stroked
my hair.

I believe my father figured out at that
moment that Mom and Anita and I had more at stake than he did in where and by
whom he was cared for. He understood this before I did. It might sound selfish,
but it really did matter more to us than him. We had more at risk. When I asked
him to stay, I was speaking out of my own needs and love, and also out of pain,
exhaustion, and confusion. I imagine that Dad's preference even then would have
been to be in a hospital; it was less messy, physically and emotionally. He
acceded to our request for the sake of Mom and Anita and me. We all needed to
care for him--even more than we knew. He no longer really cared where he was,
but he knew we did. At that moment he stopped resisting his physical dependence
and turned toward it, as if acceptance of his naked, utter vulnerability was the
next landmark on his route out of life. His decision to allow himself to be
totally cared for--dressed and undressed, toileted and turned-by his family was
his final gift to us.

Once he had decided to die in our home,
Dad knew there was nothing left undone. His affairs were in order. Love had been
expressed. Goodbyes had been said. He took his pain medications and Tylenol for
fever, but otherwise he accepted only sips of ice water or juice. He spent his
time resting quietly with his eyes closed, but he aroused easily when one of us
spoke his name, as if we had interrupted a train of thought. Often we just
sat with him, at times placing a cool washcloth on his warm forehead or placing
small amounts of water from a straw on his tongue.

He seemed withdrawn, almost as if busy on
some inward endeavor. Saying "I love you Dad" might evoke a whispered "I love
you, too" before his attention drifted elsewhere. If his eyes opened, it was
only briefly.

On Friday, forty-eight hours after his
decision to die in our home, Dad slipped beyond responding. We still talked
softly to him as we moistened his lips, bathed him, or changed his pajamas.
At this point our "I love you, Dad," or Mom's "I love you, Seymour," needed no
response. We just needed to say them. At this point the work of dying was
physical, like the early labor of childbirth. I thought how appropriate the
obstetrical term labor was; it looked like hard work. Toward evening Dad's
condition changed again, now bringing to mind a late phase of labor, also aptly
named: transition. Dad was sweating, his heart raced, and his breathing was
rapid. His body was working toward the completion of his dying. There was no way
to know what he was feeling. We sat by him and held his hand And adjusted his
pillows and kept his lips moist and his forehead cool. And we watched. I
continued to give pain medication, by injection, whenever he seemed
uncomfortable.

There was little for us to do, and none
of us wanted to leave his side. This time felt sacred, but not in the way that
scripture, liturgy, or chants are sacred. There was a luminous--or
numinous-quality to the moment. A great man was passing. So much was being lost,
but oh, what a treasure he was. What a privilege to have known him, to have
loved and been loved by him and to have been raised by him.

As we sat around his bed and sipped
coffee through the long hours of that last night, Mum and I told old Byock
family stories that Anita had never heard. Sleeplessness had left us emotionally
defenseless, and our shared sadness contributed to a bleary camaraderie. We
cried in sadness but also in joy.

At two-thirty A.M., Anita and I lay down
for a nap. Less than twenty minutes later, Mom woke us to report that Dad's
breathing had abruptly changed. He appeared suddenly to be relaxed, as if the
work, whatever it had been, was over. He was peaceful, no longer sweating, and
his breathing was easy and deep, though irregular. Mom stood touching his foot,
and Anita and I sat on each side of his bed touching his arms, as he drew his
last breath and left. For the next hour we continued our vigil: hugging one
another, crying intermittently, grieving openly and together.

At four A.M. we called Molly in New York.
Our father was dead. It seemed incomprehensible. It was still dark when I called
Gerritt at the hospital to let him know my father had died and to thank him
again for all he had done. We called the mortuary, and at eight A.M. they took
Dad away. It was so real, yet so unreal. Dad was dead. The world had forever
changed, yet it still turned; the sun still came up. The next day Mom and I
boarded a plane and took Sy home.

Dad's dying jolted me, and provided me
with powerful, if unwanted, lessons about dying and about life. Like anyone who
loses someone he loves, I groped to make sense out of the inherent
meaninglessness of the event. Losing him, the thought that I would never again
see him, caused me so much pain that if someone had asked at the time what I had
learned from his death, I might have been offended. Yet I asked myself the same
question.

Death was beyond anything I could probe;
however, the time of my father’s dying, especially the last months and weeks,
pervaded my thoughts and permeated my dreams. The memories were full of
compelling images and poignant vignettes that connected me with a deep, aching
sadness. Something about that time was also, undeniably, precious.

I had grown accustomed to seeing death
through medical eyes; my father’s cancer forced me to experience terminal
illness from the vantage point of a patient's family. Furthermore, through my
father's eyes, I glimpsed dying from the point of view of a person living in the
shadow of death. Dad’s dying was certainly not the happiest time in our family's
life, but as a family we had never been more intimate, more open, or more openly
loving. His illness allowed us, I could say forced us, to talk about the things
that mattered: family, our relationships with one another, our shared past, and
the unknown future. We reminisced about good times and bad, we cried, and we
laughed. We apologized for a host of transgressions, and we granted, and were
granted, forgiveness.Through Dad's illness and in his dying, we all grew
individually and together.

After my father's illness I began to
question my assumptions about dying and everything I had been taught about the
care of the dying. I became acutely aware of how patients dying of cancer or
other relentless illness were thought of as undignified, particularly in medical
settings. I remembered my fierce, proud father, who died slowly, at the age of
sixty-three, being consumed too early in life by his disease. I remembered the
courage and personal integrity he had exhibited and the ultimate dignity of love
he had demonstrated even as he lay dying. As he had done time and again when I
was a little boy, Dad had set an example for me as he met the hardest of life's
challenges head-on.

In the teaching hospital, death was
always treated as a problem. There were questions to answer, a Death Summary to
dictate, inches of forms to fill in, and presentations to be made at Morbidity
and Mortality Rounds. And, of course, there were always the painful, awkward
discussions to be had with family. A strong presumption throughout my medical
education was that all seriously ill people required vigorous life-prolonging
treatment, including those who were expected to die, even patients with
advanced, chronic illness such as widespread cancer, end-stage congestive heart
failure, and kidney or liver failure. It even extended to patients who saw death
as a relief from the suffering caused by their illness.

Death in the hospital was a macabre
event. I had pronounced more
than a few people dead in the ER (emergency room) or in one of the ICUs or on
the wards. Almost always the declaration was made only after dramatic
attempts, such as heart resuscitation, were made to save the person's life.
These were often literally dramatic: The actors knew the efforts were futile and
for show.

A very old patient
named Faith Carver typified a common dilemma on the wards. When she developed a
high fever, Faith was transferred to the VMC emergency room from the nursing
home where she had resided for years. Ninety-two years old, she was long widowed
and had no relatives in the Fresno area. Because of advanced dementia she had
not recognized friends for years and was completely dependent on staff for
bathing, toileting, and even feeding. Despite the fact that her health had been
declining for several years, the photocopied chart from the nursing home
contained no living will or other advanced directive regarding her preferences
for care. Contacting her next of kin in a distant city, I learned that choices
for care in the event of heart failure, stroke, or serious infection had never
even been discussed. Mrs. Carver's family, called in during a crisis situation
by a doctor they did not know, were understandably reluctant to withhold
life-prolonging treatments. This was especially true because her family had not
witnessed the extent of her decline.

The situation was all too familiar.
Without clear directions from the patient or family to do otherwise, once the
patient was in the hospital, efforts to forestall death were obligatory. Every
patient with a pneumonia or fever from bacteria in their blood received
intravenous antibiotics. Those who died only did so after an emergency code was
called over the loudspeaker and a team was summoned to perform CPR, invading the
body with tubes, compressing the chest hard enough to pump blood manually (and
sometimes crack ribs), and applying electrical jolts to try shocking the heart
back into a rhythm. I wondered what it was permissible to die from.

If death on the wards was macabre, in the
ER it was ghastly. In the
hands of the medical system, even passings that should have been peaceful turned
gruesome. Nursing homes, for instance, routinely sent patients only moments away
from death to the hospital by ambulance, lights and sirens blazing. By
transferring the almost-dead to the emergency room, nursing homes could claim a
mortality rate of nearly zero, while providing evidence to families, and any
interested attorneys, that "everything possible" had been done. This bizarre
scenario extended not only to sudden deaths but also to people who were
unconscious, in the final minutes of dying, and expected to die. Even though the
medical people knew that death had arrived and any efforts would be futile, the
system and their training compelled them to attempt CPR before they could
pronounce someone officially dead.

At the time of my father's dying, hospice
was unknown to the general population, and dying at home was very unusual. One
busy night in the ER, a black family rushed its ancient grandfather to the
hospital by ambulance. As I assessed him, lying on a gurney amid the noise and
commotion of the ER, it was clear that he was very nearly gone from this world,
beyond discomfort or any need for medical care. In taking a brief history I
learned that this tightly knit family had been taking excellent care of him at
home. They knew of his widespread prostate cancer and recognized that he was now
dying. Gingerly, I asked why they had called the ambulance. The patient's
granddaughter, a well-dressed woman of about forty, looked at me and, as the
meaning of my question dawned and pained realization widened her eyes, she asked
in reply, "Isn't it illegal to have someone die in your house?"

As an intern at VMC I realized that I was
unwittingly part of the problem. Working on the hospital wards or in the
outpatient clinics, I regularly met patients who were dying from advanced
disease but did not even have a doctor to call their own. People with widespread
cancer might show up in Surgery C clinic on a Tuesday afternoon and be seen by
whichever resident happened to pick their chart from the rack that day. During
shifts in the ER, I would occasionally meet patients who probably had only weeks
to live, who had waited four or six hours merely to have their medications
refilled. Reading the label on the empty pill bottle, I'd see that the
prescribing physician was a fellow resident who was now rotating through
obstetrics or pediatrics or orthopedics.

The county home health nurses were the
glue that held together Fresno's sparse public health system across its vast,
rural valley. Yet communication among the hospital, the outpatient clinics, and
the home health program was next to nil. Cultural and language barriers added
myriad difficulties. Within the Mexican migrant community, it was common for
patients to spend intervals with different members of an extended family; thus
addresses provided to the visiting nurse agency would often have changed between
the time of discharge and the first scheduled home visit.

I tried discharging patients from the
ward with appointments to my own clinic and writing specific orders for a nurse
to check up on them in their homes. Still, more often than not, I was frustrated
by a missed appointment, no report from the nurse, and, a week or two later, the
readmission of the patient through the ER. Confusion reigned. It seemed obvious
that some planning and coordination would benefit all concerned.

What was to become a hospice program
began as a weekly early morning meeting in the cafeteria, which I initiated over
a year before my father became jaundiced and started itching. I was not aware of
having any special insight into dying, nor did I have any special interest in
terminal care. My involvement came, I think, from a basic sense of justice and a
sense of pragmatism.

One day, while on my first-year surgical
rotation, I was told to discharge Mr. Waters, a patient who had an open
abdominal wound from cancer surgery that found unresectable tumors and from
which he would never heal. Mr. Waters was fairly comfortable but would die
within a week, two at the most. He didn't really need to be in the hospital, and
we needed the bed on his ward. I worked for hours to arrange for the equipment
and services needed to adequately care for him at home. In the process of doing
so I began talking with a social-work student at the hospital, Kimberly
Dougherty, about how things might be different.

Kimberly and I decided to keep a file
card on each terminally ill patient who had recently been discharged from the
hospital. The card included the names of a resident physician (who agreed to
follow the patient in his supervised clinic), the home health nurse assigned,
and the primary caregivers in the patient's family, with the patient's address,
phone number, and address, with directions. Each Thursday morning Kimberly and I
and a number of people representing a discipline or department of the hospital
met over coffee and doughnuts and shared updated information about the patients'
whereabouts, clinical condition, and functional status. Dr. Larry Stohlberg, a
faculty oncologist, attended regularly, as did a social worker supervisor, a
nurse from the medical floor, a chaplain, a dietician, a physical therapist, and
a pharmacist. The county visiting nurse service also sent a nurse every week as
a liaison to the home health staff. They were particularly enthusiastic; nurses
now knew which doctor to call for medication refills, and the incidence of
wasted long drives through the hot Central Valley had plummeted.

Within a couple of weeks we decided to
call the meeting a program and chose the name Esperanza, from the Spanish
esperar, "to hope" and "to wait." We borrowed two drawers of a file cabinet
in the social service office at the medical center and printed half a ream of
stationery. The Esperanza Care Cooperative was born.

The administration
of VMC was initially wary of this upstart hospice program within its walls. But
within months the positive effect Esperanza had on staff and patient
satisfaction was indisputable, and the attitude of the administration gradually
shifted from tolerance to acceptance. Communication within the hospital improved
as the social workers and nurses were better able to exchange critical
information with the resident doctor who knew a patient from previous admissions
or from her clinic practice. Discharge planning for Esperanza patients was
streamlined and some hospital stays were shortened because of improved
coordination between the wards, the clinics, and the home health program. In the
course of the weekly discussions a number of major crises were averted because
problems could be dealt with in a timely manner.

After my father died, my interest in
hospice deepened. Most of the discussions at hospice meetings were about
pragmatic or medical things: how to get a hospital bed into a trailer; how to
coordinate care within a family of five adult children from two generations,
some of whom would never admit that the family's matriarch is dying; how best to
treat bone pain in metastatic breast or prostate cancer; and what to do when a
patient's nausea will not go away.

Every once in a while a family would
return after a patient died and say that their loved one's passing had been
extraordinary. "When we heard Mama was terminal, it was the worst thing that
ever happened to our family, but this last month with her was some of the best
time we have ever spent together" was the sort of comment I had occasionally
heard before but had always dismissed as a peculiar, if pleasant, phenomenon.
Now my ears perked up whenever someone mentioned a case that had gone especially
well. A nurse might talk about
a patient who reported a sense of wellbeing or contentment in the midst of their
dying. Indeed, I began to notice that every so often a terminally ill patient
would smile at me and seem not only comfortable, but also oddly satisfied, while
only days from death.

It was a revelation to me that good
deaths existed outside the realms of fiction, religious literature, or poetry;
they were apparently uncommon, but real. The phenomenon of "good deaths" seemed
to provide a window into the core of hospice work and, perhaps, into the heart
of the human experience of dying. I began asking patients and families to help
me understand how they felt and why.

Several things became apparent early on.
The first was that the experience of dying was highly individualized. Some
people died much as they had lived, while others changed in dramatic ways. The
most positive experiences reported by patients and families involved change that
they described as important or even "healthy."
I also noticed common, salient features within the rich variations of individual
experience. Patients who died most peacefully and families who felt enriched by
the passing of a loved one tended to be particularly active in terms of their
relationships and discussions of personal and spiritual matters. These
families in particular also seemed to be involved in the person's physical care.
In the broadest sense, it was as if dying from a progressive illness had
provided them with opportunities to resolve and complete their relationships and
to get their affairs in order.

This was another revelation--that good
deaths were not random events or matters of luck; they could be understood and,
perhaps, fostered.

While I was working to understand dying
and improve my own care for my dying patients, the clinical work of hospice was
working on me, sending roots deep into my psyche and soul. In the years that
followed my career took me first to a family practice in rural Montana and then
back to emergency medicine in Billings, and then Missoula.

Through the years, the geographic moves,
and the practice of family and then emergency medicine, I remained involved in
hospice work, compelled by the problems of the dying and fascinated by the
phenomenon of the good death. More than once I have witnessed a hospice nurse
smile and nod to a colleague in acknowledgment that a case had gone well, as if
fulfilling the old adage: "To those who know, no explanation is necessary, to
those who don't know, no explanation is sufficient." At conferences and in the
medical literature there was surprisingly little, if any, discussion of good
deaths. Without a consistent language and conceptual model for the range of
human experiences at life's end, a taxonomy to label what we clinically saw, it
was as if the phenomena did not actually exist. Out of curiosity, I began asking
hospice colleagues to help me define success at life’s end. I asked nurses,
social workers, pastoral care providers, bereavement coordinators, and doctors.
The choice of words used to describe “success” varied widely. A number of
hospice caregivers referred to the dying person’s having changed in a spiritual
manner, but there seemed to be a wide variation in what was meant. At least as
often as not, the account of the patient's good death did not sound particularly
spiritual. Others talked about the person or family having coped well with the
illness and death. Still others spoke of healing that had occurred between the
patient and loved ones or within the person dying. And some chose the
terminology of growth.

In recent years I have consciously
rejected the term good death because I have not found it helpful in describing
the personal, human experience of decline and demise. Good death connotes a
formulaic or prescriptive approach to life's end, as if a good outcome chiefly
depended on the right mix of people, place, medications, and services.
Furthermore, the phrase good death tends to blur the distinction between
death--the state of nonliving--and the preceding time of living.

If you ask someone to describe what, for
them, would be a good death, they will typically tell you what they want to
avoid. "I don't want to die in pain." "I don't want to suffer." "I don't want to
be a burden on my family" "I don't want to leave my family with debts or go
through our savings." "I don't want to die alone." The image such statements
convey of a good death resembles a photographic negative, devoid of tone and
texture or real color.

In contrast, the phrase dying well
seems better suited to describing the end-of-life experience that people desire.
It expresses the sense of living, and a sense of process. To my ears it also
carries a connotation of courage. Furthermore, dying well expresses what I have
witnessed most consistently: that in the very shadow of death one's living
experience can yet give rise to accomplishment, within one's own and one's
family's system of values.

Over the years I have met a number of
people who were emotionally well while their physical body was withering and,
for some, literally rotting. Logically, if even the most emotionally robust
among us will eventually die, it follows that a certain wellness in dying must
be possible. My experience in hospice confirms that this is true. Even as
they are dying, most people can accomplish meaningful tasks and grow in ways
that are important to them and to their families.

In my clinical hospice work, the
conceptual model of lifelong human development has provided me with an
orientation and thus has helped me to orient others. Years ago I began keeping
notes on the developmental landmarks and "taskwork," as I call it, relevant to
the end of life. I hoped that defining the landmarks might provide some light
and offer a general sense of direction within this dim, foreboding landscape,
and that naming the taskwork might provide paths for a person's individual
journey.

This developmental work reliably enhances
the quality of living.

The process is intriguingly similar to
the stages of pediatric development. To the toddler, the world keeps shifting;
her physical and emotional environments change frequently and in unpredictable
ways. How she sees herself and how she is seen differ from month to month and,
at times, week to week. What others expect of her continually changes. Within
her body and her person, new needs regularly arise and must be satisfied. Life
for the toddler presents fresh challenges that must be successfully negotiated,
or she feels insecure. To the extent she persists in clinging to old strategies
of navigating in the world and relating to others, there is distress. For some
children, the rate of change proves too fast--the extent of growth and
development demanded by circumstances proves too large to compress into a few
weeks' time, and, at least transiently, there is suffering.

Someone who is dying, like the developing
child, goes through stages of discovery, insight, and adjustment to constantly
changing circumstances in his person and in the ways people react to him.People who are dying often feel a sense of constant pressure to adapt to
unwanted change. As a person's functioning declines, the physical environment
becomes threatening. A trip to the bathroom may become an hour's chore and then,
a few weeks later, a major event. On learning of the grave prognosis, family and
friends may begin acting differently, becoming serious or even solemn in one’s
presence. People may avoid one out of their own emotional pain, leaving one
feeling awkward and isolated, an innocent pariah. New strategies are urgently
needed to forestall a sense of personal annihilation. Mastering the taskwork
may involve personal struggle, and even suffering, yet it can lead to growth and
dying well. The tasks are not easy. But as a dying person reaches
developmental landmarks such as experienced love of self and others, the
completion of relationships, the acceptance of the finality of one’s life, and
the achievement of a new sense of self despite one's impending demise, one's
life and the lives of others are enriched.

For the growing child and her family,
each development landmark is typically accompanied by feelings of mastery,
expansion, a sense of wellness, and, at times, exhilaration. The same feelings
are expressed in the stories of patients and families who may be said to have
died well. Often the challenge for a family, loved ones, and other caregivers
is to recognize the opportunities for growth and development and to help the
dying person achieve them. This takes courage. It takes a willingness to talk
about things usually avoided, like painful memories, hurt and buried feelings,
and the pragmatic details of dying and death--including with whom and where,
obituaries, cremation or burial, and funerals.The time of dying is a
dark, foreboding place--the end of the road, beyond which lies an unknown,
terrifying terrain. But identifying the tasks and landmarks to be met can
provide a reassuring map through an otherwise dim future. One way to start this
journey is by asking "What would be left undone if I died today?" and "How can I
live most fully in whatever time is left?" These questions can illuminate
the tasks and landmarks ahead.

Over the years our hospice team in
Missoula has become increasingly adept at helping people work toward end-of-life
goals that have meaning for them. And it has become common for people we
encounter to achieve a sense of inner well-being even as they die, and for
families to express that their loved one's dying was as precious as it was
painful. I know of no better way to explain what I have learned than to relate
the stories of some of the people I have cared for. [1-24]